Appropriately titled :-)
This hurricane sucks! I usually love these storms. I'm one of those crazies who say "Let's go check it out," but for the last three days I've been stuck in my house, in my bed with the lights out. I'm miserable. The pressure from this storm has been killing my head and I've been sitting at a 9 with no relief. I've literally been bouncing off my walls from dizziness and lack of balance. I've been laying around so much that my body is starting to ache.
BUT! I'm going to look at the plus side of this...I've been able to spend some quality time with my husband when he comes to check on me :-) My kids also got an extra day with their daddy so they've gotten to spend quality time with him too.
I know this is short and sweet but its killing my head, so I'll finish off for now, but I want to finish by saying that I hope that everyone is staying safe and warm and dry in their homes or shelters.
Monday, October 29, 2012
Wednesday, October 24, 2012
"His Eye is on the Sparrow"~Lauryn Hill
Going to church has been a hard thing for me to do for a very long time. Way before I was even diagnosed with MdDS. However, when I asked if you needed help finding things that work for you, majority stated that going to church was extremely hard. This was hard for me to understand, because church should be your most comfortable place to be able to be yourself, to feel warmth and to be comforted.
The first was an unexpected funeral that I attended. The funeral was very difficult for me because of the emotional aspect of it, but also because there is no getting up and moving around at the funeral. This particular church had beautiful organ pipes running up the walls behind the pastor, and because of that I constantly felt dizzy. There were a few times that I had to hang my head low and watch the carpet. A few times I had to close my eyes and just pray on my own because I couldn't concentrate on what the pastor was saying to the congregation. I stayed at the back of the church in case I needed to get up and move around because of me sitting for long periods of time is very difficult. The large amount of people made me extremely nervous.
The second time I went into church was for my daughter. My beautiful, gorgeous girl joined a children's choir with a friend of mine and loved it. She came to me and asked if I would come see her sing. After the funeral, I was a little nervous, but this was the first time my daughter had asked or done something like this and knew I had to push through for her. I attended and actually sat towards the front of the church. The music was wonderful. We were able to stand up to sing and so I just swayed to the music. For the first time in a long time my heart wasn't heavy. Yes, I held onto my husbands hand the whole time and also on the back of the pew in front of me. I prayed hard, and felt lifted. But during the sermon I had difficulties. I started feeling anxious and nervous because I couldn't rock in the pew like my body wanted me to. I tried to just sway sitting but felt like I was crazy because there were people behind me.
Church is place where you come to open your heart, mind and soul. No matter your denomination, you should feel comforted in your place of worship. Your fellow worshipers should lift their hands up and be a comfort to you. This is where accepting our syndrome and who we are becomes a large part of us. I understand most people don't want the world to know what we are going through, but without talking about it and having awareness, there will be no end in sight.
So here is what I did and/or know to do in the future:
1. I sat in the end of the pew and the back was much better than the front. This way if I needed to get up, I wasn't a distraction.
2. When music started, I stood and I just swayed. "You have turned for me my mourning into dancing; you have loosed my sackcloth and clothed me with gladness" Psalm 30:11* I held on when I needed to and just rocked back and forth. I let the music become a part of me, and in turn it made me feel better.
3. I also found that there are churches in my area that have "Crying rooms" that have a live feed and windows that you can see into the church. If your movement is so bad that you cannot sit with the congregation, but want to be a part of it. These rooms are like your own little church bubble in a sense. You can here the sermon, see the pastor and congregation, and be up and moving around without distraction.
4. Talk to your pastor. Explain how you feel, and what is happening. Tell him/her that you may have to stand, walk, move around. Pastors are used to distractions. They are great public speakers and should not be bothered by this.
It is going to take time and understanding for all parties, but church is a place where healing happens, mentally and physically.
If you have your own tips, please leave them in the comments below so that we may be able to help each other out.
"Heal me, LORD, and I will be healed; save me and I will be saved, for you are the one I praise." Jeremiah 17 : 14.*
I have avoided church for my own reasons, but it seemed like a very good sign when you asked for this type of topic, and in within two weeks time, I was needed at church for various reasons. The first was an unexpected funeral that I attended. The funeral was very difficult for me because of the emotional aspect of it, but also because there is no getting up and moving around at the funeral. This particular church had beautiful organ pipes running up the walls behind the pastor, and because of that I constantly felt dizzy. There were a few times that I had to hang my head low and watch the carpet. A few times I had to close my eyes and just pray on my own because I couldn't concentrate on what the pastor was saying to the congregation. I stayed at the back of the church in case I needed to get up and move around because of me sitting for long periods of time is very difficult. The large amount of people made me extremely nervous.
The second time I went into church was for my daughter. My beautiful, gorgeous girl joined a children's choir with a friend of mine and loved it. She came to me and asked if I would come see her sing. After the funeral, I was a little nervous, but this was the first time my daughter had asked or done something like this and knew I had to push through for her. I attended and actually sat towards the front of the church. The music was wonderful. We were able to stand up to sing and so I just swayed to the music. For the first time in a long time my heart wasn't heavy. Yes, I held onto my husbands hand the whole time and also on the back of the pew in front of me. I prayed hard, and felt lifted. But during the sermon I had difficulties. I started feeling anxious and nervous because I couldn't rock in the pew like my body wanted me to. I tried to just sway sitting but felt like I was crazy because there were people behind me.
"He said, 'If you will listen carefully to the voice
of the Lord your God, and do what is right in his sight, and give heed
to his commandments and keep all his statutes, I will not bring upon you
any of the diseases that I brought upon the Egyptians; for I am the
Lord who heals you.'"Exodus 15:26*
I plan to continue to go, but here are a few items that I've come up with to start us off. I'll continue the list as soon as I notice more options for us out there.Church is place where you come to open your heart, mind and soul. No matter your denomination, you should feel comforted in your place of worship. Your fellow worshipers should lift their hands up and be a comfort to you. This is where accepting our syndrome and who we are becomes a large part of us. I understand most people don't want the world to know what we are going through, but without talking about it and having awareness, there will be no end in sight.
So here is what I did and/or know to do in the future:
1. I sat in the end of the pew and the back was much better than the front. This way if I needed to get up, I wasn't a distraction.
2. When music started, I stood and I just swayed. "You have turned for me my mourning into dancing; you have loosed my sackcloth and clothed me with gladness" Psalm 30:11* I held on when I needed to and just rocked back and forth. I let the music become a part of me, and in turn it made me feel better.
3. I also found that there are churches in my area that have "Crying rooms" that have a live feed and windows that you can see into the church. If your movement is so bad that you cannot sit with the congregation, but want to be a part of it. These rooms are like your own little church bubble in a sense. You can here the sermon, see the pastor and congregation, and be up and moving around without distraction.
4. Talk to your pastor. Explain how you feel, and what is happening. Tell him/her that you may have to stand, walk, move around. Pastors are used to distractions. They are great public speakers and should not be bothered by this.
It is going to take time and understanding for all parties, but church is a place where healing happens, mentally and physically.
If you have your own tips, please leave them in the comments below so that we may be able to help each other out.
"Then they cried to the Lord in their trouble, and he saved them from
their distress; he sent out his word and healed them, and delivered them
from destruction. Let them thank the Lord for his steadfast love, for
his wonderful works to humankind."
Psalm 107:19-21*
*All quotes from King New Version Bible.
Thursday, October 18, 2012
"What the Water Gave Me"~Florence & The Machine
I'm going to be short tonight because my head is killing me.
This weather sucks! One day its freezing, the next its hot. One day its storming and the next its so sunny you need to put on sun screen. This weather has not only caused runny noses & coughing for Seth, but has thrown me for a loop. I usually never have a problem with weather ups & downs, but I guess now this is something that I'm going to have to get used to. I've had this pressure in my ears, more so right than left, but its killing me. Its not an ache like I have an ear infection, but just severe pressure. Its also causing horrific headaches that no medicine can touch, not even my Fiorcet which I hate taking in the first place. My rocking is so bad it is actually waking me up in the middle of the night. Its a crazy feeling when you feel like an earthquake has hit while you are in a deep slumber. Waking up each morning is one of the hardest things to do. I'm so exhausted that at night I lay down for 10 minutes and I'm out. I've actually gotten to the point that I want to take naps in the afternoon. Its crazy how much the weather changes my day to day living. Rainy days are the worst.
This weather sucks! One day its freezing, the next its hot. One day its storming and the next its so sunny you need to put on sun screen. This weather has not only caused runny noses & coughing for Seth, but has thrown me for a loop. I usually never have a problem with weather ups & downs, but I guess now this is something that I'm going to have to get used to. I've had this pressure in my ears, more so right than left, but its killing me. Its not an ache like I have an ear infection, but just severe pressure. Its also causing horrific headaches that no medicine can touch, not even my Fiorcet which I hate taking in the first place. My rocking is so bad it is actually waking me up in the middle of the night. Its a crazy feeling when you feel like an earthquake has hit while you are in a deep slumber. Waking up each morning is one of the hardest things to do. I'm so exhausted that at night I lay down for 10 minutes and I'm out. I've actually gotten to the point that I want to take naps in the afternoon. Its crazy how much the weather changes my day to day living. Rainy days are the worst.
Wednesday, October 17, 2012
"Not Afraid"~Eminem
I know, this song has completely different meaning, however the chorus & bridge is very strong to me. I'm dedicating this to all my other MdDSers out there. I've joined pretty much every support group out there, and reading everyday messages, posts and comments help more than you know, and I know most of you feel the same way.
We know there is no cure. There is no easy fix. We are stuck with this syndrome and it sucks! We try rehabs, exercises and meds. We have our good days that give us hope and then the next day we are laid out. Its an constant up hill battle that we have to climb, and we can barely walk straight. We fight. We struggle. We push through. We fall. We cry. We stress. We get frustrated. We fight. We stand up. We move forward (even if it is off balance and crooked). We learn.
We research everyday. By using each other, we find new studies, new meds, new treatments. For a lucky few, you find what works. For a lucky few, your symptoms disappear again. But for most, we continue the fight everyday. Yes, we have friends who try to support and understand. We have family who help and push through with us. But having someone who knows exactly what you are going through every day, someone who says, "Me too!," someone who has been through the trials and fails of treatments, it makes you feel like you aren't crazy. Its amazing when you put a post up on a wall, and immediately someone says, "You will get through this. We will get through this."
We may not feel strong everyday. We are entitled to our weak days. We are strong though. We ARE fighters. We will find the cure. We will fight until there is no one who ever has to feel this way again.
We know there is no cure. There is no easy fix. We are stuck with this syndrome and it sucks! We try rehabs, exercises and meds. We have our good days that give us hope and then the next day we are laid out. Its an constant up hill battle that we have to climb, and we can barely walk straight. We fight. We struggle. We push through. We fall. We cry. We stress. We get frustrated. We fight. We stand up. We move forward (even if it is off balance and crooked). We learn.
We research everyday. By using each other, we find new studies, new meds, new treatments. For a lucky few, you find what works. For a lucky few, your symptoms disappear again. But for most, we continue the fight everyday. Yes, we have friends who try to support and understand. We have family who help and push through with us. But having someone who knows exactly what you are going through every day, someone who says, "Me too!," someone who has been through the trials and fails of treatments, it makes you feel like you aren't crazy. Its amazing when you put a post up on a wall, and immediately someone says, "You will get through this. We will get through this."
We may not feel strong everyday. We are entitled to our weak days. We are strong though. We ARE fighters. We will find the cure. We will fight until there is no one who ever has to feel this way again.
"I'm not afraid (I'm not afraid)
To take a stand (to take a stand)
Everybody (everybody)
Come take my hand (come take my hand)
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just letting you know that, you're not alone
Holla if you feel like you've been down the same road (same road)
To take a stand (to take a stand)
Everybody (everybody)
Come take my hand (come take my hand)
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just letting you know that, you're not alone
Holla if you feel like you've been down the same road (same road)
And I just can't keep living this way
So starting today, I'm breaking out of this cage
I'm standing up, I'ma face my demons
I'm manning up, I'ma hold my ground
I've had enough, now I'm so fed up
Time to put my life back together right now"
So starting today, I'm breaking out of this cage
I'm standing up, I'ma face my demons
I'm manning up, I'ma hold my ground
I've had enough, now I'm so fed up
Time to put my life back together right now"
Thank you to those who respond to post, who comment, and who suggest treatments. We can get through all of this together. We will stand out ground, fight and get out lives back. Day by day, we will do this.
Thursday, October 11, 2012
"October"~U2
Let me just start off with the face that I LOVE this song! Its just so simple, so beautiful. Its so appropriate, not just for the month, but the fact that the song says
"October
And the trees are stripped bare
Of all they wear
What do I care
October
And Kingdoms rise
And Kingdoms fall
But you go on...
...and on..."
So here I am, going on & on.
I've been a musical mood lately, which I guess is good since I need some new music to use at titles for my blog, but also because my kids are driving me crazy singing the same songs over & over again. I must say that my kids amaze me in the fact that they can hear a song one or two times and they've learned at least the chorus, if not more of the song.
On another note, my post op appointment went well. I even had to go to a different office, which between all of the mini blinds on the windows & carpet, I got a little dizzy, but I only stayed at about a 3!!! I've only been at a max of 4 this week which is AMAZING! I was able to grocery shop last night and still come home and clean and walk to go get Seth from school without any bad episodes.
And one last note for the day, I am addicted to "The Chew." This show is amazing because we now are currently on a major budget and I watch them make meals that are so easy, yet so inexpensive. Now don't get me wrong, I am a Food Network girl; however, I'm always discouraged because the meals have items that there is no way I could make either because its too expensive or too time consuming. I'll let you guys know if I find any recipes that work well for a family of 4 that are easy for us MdDS people (or the non-MdDS...not trying to leave you guys out either :-D )
My last note of the day is I need some ideas for new blogs. I don't want to repeat on tips for MdDSers. I'll continue to write my day-to-day type blogs on how I am on a daily-weekly basis, but I want to be able to help out my fellow MdDS friends, so if there are topics that you would like to have idea or tips, then please let me know. I will be glad to look at them and figure out ways to help. Also, if there are any non-MdDSers that would like to know more information on day-to-day life, let me know your questions and I can do an Q&A blog.
Please find me on Facebook, Twitter or E-mail me at bubandbugsmom@yahoo.com.
"October
And the trees are stripped bare
Of all they wear
What do I care
October
And Kingdoms rise
And Kingdoms fall
But you go on...
...and on..."
So here I am, going on & on.
I've been a musical mood lately, which I guess is good since I need some new music to use at titles for my blog, but also because my kids are driving me crazy singing the same songs over & over again. I must say that my kids amaze me in the fact that they can hear a song one or two times and they've learned at least the chorus, if not more of the song.
On another note, my post op appointment went well. I even had to go to a different office, which between all of the mini blinds on the windows & carpet, I got a little dizzy, but I only stayed at about a 3!!! I've only been at a max of 4 this week which is AMAZING! I was able to grocery shop last night and still come home and clean and walk to go get Seth from school without any bad episodes.
And one last note for the day, I am addicted to "The Chew." This show is amazing because we now are currently on a major budget and I watch them make meals that are so easy, yet so inexpensive. Now don't get me wrong, I am a Food Network girl; however, I'm always discouraged because the meals have items that there is no way I could make either because its too expensive or too time consuming. I'll let you guys know if I find any recipes that work well for a family of 4 that are easy for us MdDS people (or the non-MdDS...not trying to leave you guys out either :-D )
My last note of the day is I need some ideas for new blogs. I don't want to repeat on tips for MdDSers. I'll continue to write my day-to-day type blogs on how I am on a daily-weekly basis, but I want to be able to help out my fellow MdDS friends, so if there are topics that you would like to have idea or tips, then please let me know. I will be glad to look at them and figure out ways to help. Also, if there are any non-MdDSers that would like to know more information on day-to-day life, let me know your questions and I can do an Q&A blog.
Please find me on Facebook, Twitter or E-mail me at bubandbugsmom@yahoo.com.
Monday, October 8, 2012
"Wild"~Royal Teeth
This weekend was awesome! We spent Saturday with my in laws. My hubby got to go golfing with his dad, brother, and my son, and I got to spend the day with my mother-in-law and daughter. Most women would dread this, but you have to understand that I love my mom-in-law. She is a phenomenal woman who has been so supportive of me and my family. We had a great time together. Both my father & mom-in-law are great people.
That night we had a family movie night at home with "The Avengers" and the kids had their first slumber party on the floor of the living room. I couldn't watch parts of the movie due to flashing lights and fast moving actions, but we still had a good time.
Then Sunday was time well spent with my family. Lunch with my momma & grandfather, and then dinner with my mom, brother, sister & my little family. Tons of good conversation & lots of laughs. I love our Sunday family dinners.
This weekend gave me a great appreciation for the fact that both my family & my husband's family are close by. My kids get to be close to their family too, so they get to experience it all too.
On a happier note, my MdDS has been about at 3-4 level!!! It feels amazing! We shall see how the rest of the week goes because the weather is sucky and when weather is sucky I feel yucky! So far, so good though!
That night we had a family movie night at home with "The Avengers" and the kids had their first slumber party on the floor of the living room. I couldn't watch parts of the movie due to flashing lights and fast moving actions, but we still had a good time.
Then Sunday was time well spent with my family. Lunch with my momma & grandfather, and then dinner with my mom, brother, sister & my little family. Tons of good conversation & lots of laughs. I love our Sunday family dinners.
This weekend gave me a great appreciation for the fact that both my family & my husband's family are close by. My kids get to be close to their family too, so they get to experience it all too.
On a happier note, my MdDS has been about at 3-4 level!!! It feels amazing! We shall see how the rest of the week goes because the weather is sucky and when weather is sucky I feel yucky! So far, so good though!
Friday, October 5, 2012
"Kind & Generous"~Natalie Merchant
I'M BACK! WOOO HOOO!
I haven't written in awhile due to my surgery from last week. Recovery was a little harder than I thought. So here's my update:
I was really concerned about going under with my MdDS. When I woke up I felt so nauseated, but the docs were awesome about getting that under control. I really wish I had those kind of drugs for my bad days, let me tell you! It was like instant relief. I slept awhile there in the hospital, but was able to go home okay. However, the first time I stood on my feet the entire room shook. I felt like I was on a boat on "Deadliest Catch". It was horrible! But after walking a bit, I was somewhat okay. My hubby had to walk me to the bathroom and help with getting dressed, but I was good. I came home and slept most of the day.
I wrote last week about having to let go of my job as well which was really tough for me. I loved my job, but this is my plan for now, and so I must follow it.
So this weekend I was feeling way better about everything, but because I felt so wonderful I ended up pushing myself too hard on Saturday. Sunday I tried relaxing and we got to have our first family dinner in a long time with my sister, brother, mom & niece along with my hubby & kids. It was good energy and I felt good when I left there as well.
Here comes Monday. I woke up feeling tired and ended up taking a nap early in the morning. I woke up to "A Baby Story" on TLC. Seeing someone have a baby just made a wave of emotion hit me. It was the first time I really truly grieved over the fact that my husband & I are done having children. For me this is hard because I always wanted a big family. I also loved being pregnant and to never have that feeling of a baby again was devastating to me. About an hour later I had to go out to my job to turn in my security card & termination paperwork. It was official, my job was done. This emotional Monday was destruction to my MdDS (which up until this point had been roughly normal).
Here comes Tuesday. I go to get out of bed to take care of the kids and I feel like I just did a week ago coming out of surgery. My entire room rocking so hard. I started getting dizzy and began to black out. My beautiful dog, Creamer was there when I went down and was there when I woke to her licking my hand. I got up thinking, I just need to eat something. Next came horrible neck & shoulder pain. I persevered and continued getting Seth ready for school. Here comes the dizzy spell and another black out. When I came to this time, I decided that today is going to be just a couch day. Next thing I know my head is KILLING ME! I can't lift my head off of my pillow. I stand up to get my phone and see aura the entire time. All I can do is text my husband....a text that was written like this "I dizzy headache keep blacking out need help please." Josh comes home and takes me to the doctor. Migraine. Great. This is one of the worst migraines I've had since high school and those were debilitating headaches. Rest. I need sleep. So I go home and just sleep all day. The next day my mom-in-law comes to get Lily and takes her to her house and I'm here at home to sleep off the residual headache. I'm miserable.
Here comes Wednesday. Today is much better. I feel almost my "normal" self. Still got my rocking thing going on, but its not too bad. I
I've decided that I'm not going to push myself anymore. I expect to have more bouts of emotions, but I'm going to get through this. I'm going to to claim my new life and keep moving forward. It took me awhile to come back, but I'm here and I'm going to get back into my routine of writing again.
I want to say thanks to all of my followers for all the wonderful messages. They have been very comforting and have definitely given me a lot of strength when I didn't think I had any left.
To my mom, mom-in-law, Tara, Jake, Sharon, Jessica, Sue Ann, and Anna for helping so much these last two weeks.
To my husband who has been my rock through all of this. I know that you have had your feelings about everything as well. It has been a tough road these last few months, but we've pushed through together. We have definitely followed through every portion of our vows to one another these last few months and I'm so happy that you are my partner through it all.
Here's to many more entries!
I haven't written in awhile due to my surgery from last week. Recovery was a little harder than I thought. So here's my update:
I was really concerned about going under with my MdDS. When I woke up I felt so nauseated, but the docs were awesome about getting that under control. I really wish I had those kind of drugs for my bad days, let me tell you! It was like instant relief. I slept awhile there in the hospital, but was able to go home okay. However, the first time I stood on my feet the entire room shook. I felt like I was on a boat on "Deadliest Catch". It was horrible! But after walking a bit, I was somewhat okay. My hubby had to walk me to the bathroom and help with getting dressed, but I was good. I came home and slept most of the day.
I wrote last week about having to let go of my job as well which was really tough for me. I loved my job, but this is my plan for now, and so I must follow it.
So this weekend I was feeling way better about everything, but because I felt so wonderful I ended up pushing myself too hard on Saturday. Sunday I tried relaxing and we got to have our first family dinner in a long time with my sister, brother, mom & niece along with my hubby & kids. It was good energy and I felt good when I left there as well.
Here comes Monday. I woke up feeling tired and ended up taking a nap early in the morning. I woke up to "A Baby Story" on TLC. Seeing someone have a baby just made a wave of emotion hit me. It was the first time I really truly grieved over the fact that my husband & I are done having children. For me this is hard because I always wanted a big family. I also loved being pregnant and to never have that feeling of a baby again was devastating to me. About an hour later I had to go out to my job to turn in my security card & termination paperwork. It was official, my job was done. This emotional Monday was destruction to my MdDS (which up until this point had been roughly normal).
Here comes Tuesday. I go to get out of bed to take care of the kids and I feel like I just did a week ago coming out of surgery. My entire room rocking so hard. I started getting dizzy and began to black out. My beautiful dog, Creamer was there when I went down and was there when I woke to her licking my hand. I got up thinking, I just need to eat something. Next came horrible neck & shoulder pain. I persevered and continued getting Seth ready for school. Here comes the dizzy spell and another black out. When I came to this time, I decided that today is going to be just a couch day. Next thing I know my head is KILLING ME! I can't lift my head off of my pillow. I stand up to get my phone and see aura the entire time. All I can do is text my husband....a text that was written like this "I dizzy headache keep blacking out need help please." Josh comes home and takes me to the doctor. Migraine. Great. This is one of the worst migraines I've had since high school and those were debilitating headaches. Rest. I need sleep. So I go home and just sleep all day. The next day my mom-in-law comes to get Lily and takes her to her house and I'm here at home to sleep off the residual headache. I'm miserable.
Here comes Wednesday. Today is much better. I feel almost my "normal" self. Still got my rocking thing going on, but its not too bad. I
I've decided that I'm not going to push myself anymore. I expect to have more bouts of emotions, but I'm going to get through this. I'm going to to claim my new life and keep moving forward. It took me awhile to come back, but I'm here and I'm going to get back into my routine of writing again.
I want to say thanks to all of my followers for all the wonderful messages. They have been very comforting and have definitely given me a lot of strength when I didn't think I had any left.
To my mom, mom-in-law, Tara, Jake, Sharon, Jessica, Sue Ann, and Anna for helping so much these last two weeks.
To my husband who has been my rock through all of this. I know that you have had your feelings about everything as well. It has been a tough road these last few months, but we've pushed through together. We have definitely followed through every portion of our vows to one another these last few months and I'm so happy that you are my partner through it all.
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